Ryan had a good nights sleep but Rachel says he still looks wiped out. She also says he has been enrolled in the hospital school!

Spoke to Rachel who tells me that Ryan was fairly settled last night. He was up, washed and sitting on her knee. The plan now seems to be to increase his feed VERY SLOWLY over several weeks. Previously he has responded  well to starting his feed again but ultimately having severe pain and his feed having to be stopped. Fingers and everything crossed please. The downside of his return to hospital is that Rachel will have very little home time.

Ryan had an unsettled night. He is having a bath today and is back on milk. He is then off back to Newcastle hospital where I hope, should he be in pain,  they mange to control it !! 
I also hope that Rachel continues to stay strong for Ryan, as she has done for so many years.

Back from visiting Ryan in St. Oswalds where we (Kathie and Sarah) found him fairly relaxed and drifting in and out of sleep. However, he looked really frail and not at all well. He may be going back to Newcastle hospital tomorrow. I am not sure what they hope to achieve by moving him again but hope they can get some milk into him and that he does his usual trick of perking up again. I am so glad I was fit enough to make the journey and hope I am able to do so again soon. I do miss him and Rachel.

Rachel tells me that Ryan is not great today and having tummy ache again. She feels that something might be brewing and she is normally right when she gets this feeling.

I thought you would like to see this from Ethan's Mum on her CaringBridge page. Ethan has Hunters like Ryan and we went to see him in Ireland a few years ago. It is typical of the parents of Hunters children to find time to care and support others with the disease.

I would like to ask you to keep a very special boy, Ryan, in your thoughts, he is fighting Hunters and is having a hard time. We feel really close to Ryan and his family as we meet them a few years ago, they came from England for a visit and we fell in love with Ryan. 

Thank you all for checking up on Ethan, we appreciate the support and the messages are so uplifting... Thank you all.

Ryan has had a good day. He has tolerated his feed, had a spell in the Sensory room and watching a film in the lounge. He is settled and chilled this evening. 

Ryan has had quite a good day today.

Saw this on Facebook. It is Ryan in St Oawalds cinema.

Apparently Ryan is not so good today with some milk having to be removed from his tummy, as it was causing some distress. He is back into Newcastle hospital on Monday. I feel so upset about what looks as if it could be a return to more pain and I hope they can get on top of this recurring problem.

Spoke to a nurse at the hospice who said Ryan had a really good morning and sat in an armchair watching a film. At about 3pm he fell asleep and was still asleep when I rang at 8pm. I see from Rachel's Facebook that he is: "doing really well but talking about transferring us back to hospital". I hope this means that they think he is now responding to treatment, which would be better managed in hospital.

Ryan had a good night and a "poo" and has been out of bed sitting in a chair and on Rachel's knee. So far - so good. We have been here before, so I am not getting too excited yet. However, compared to the prognosis we were given in hospital, he is doing exceptionally well!

Rachel says Ryan had a bit of a tummy ache last night and today.

I am running out of words to describe how strong Ryan is. Every time I think he can't get better and just needs to be kept sedated and pain free, he fights back against all the odds.

After another settled night his milk intake is being increased to 20mls. As I write this (11am) Rachel tells me he is sitting in the children's lounge watching TV! AMAZING.

I asked Rachel if there is any news today and she said that there is a severe weather warning! She's not lost her sense of humour, thank goodness.
Ryan had a good night on the same amount of milk as yesterday but on full strength this time. He has been asleep most of the afternoon.
For those of you who didn't recognise Ryan's visitor yesterday, it was Peter Beardsley, one of Newcastle United's all time greats. I believe he signed a United shirt for Ryan. Still a great man then. 

Ryan had a settled night and is now on 15mls of milk an hour. This might not sound a lot but as long as he tolerates it, is a real step forward. We are keeping everything crossed that he continues to make progress after the traumatic time he has had recently.

Look who popped in to see Ryan today!
(Some ladies might not recognise him)

Rachel says Ryan had quite a settled night and is now watching a bit of TV between naps. She might try a bit of half strength milk later but obviously wants to take things VERY slowly.
LATER. He has had 60mls and has digested it. So far, so good.

Ryan had a slightly unsettled night but appeared to cope with the changes detailed yesterday. The next 24 hours should let us know if he continues to cope.

Just seen this on Facebook and couldn't believe my eyes. This was Ryan today, proving once again to be an amazingly strong boy.

Rachel tells me that They are reducing one of Ryan's sedations and trying to get some water and an antibiotic into his stomach. This after several days with nothing other than via a drip. He has been awake for a short spell and watching TV. All this is positive news and shows once again what a very strong boy he is.
276 views  today.

My Ryan is such a brave amazing boy just managed a smile and a kiss for me. Priceless. Come on son xxxxxx
Text from Rachel's Facebook page at about 10pm.

Ryan had a good night and is still asleep albeit slightly fidgety at 11.45 this morning.

After a terrible night Ryan has had a very settled day. Fingers crossed for tonight when Bob will relieve Rachel.

We visited St Oswalds in Gosforth, where we found Ryan is still suffering from bouts of extreme pain, interspersed with some long quiet moments. The nurses are able to respond quickly when the pain starts but it is distressing to watch him whilst the various treatments kick in. I understood from the doctor in Newcastle that they would try and keep him permanently sedated to avoid these  painful episodes but apparently this can't be done.
Someone queried my comment that Ryan was being sedated above the normal limits. Just to explain, the doctor told me this was the case, as normal sedation was not working.
I am not sure when I can visit again as, to add to my back and leg problem, I now have what appears to be a frozen shoulder. Compared to what Ryan has to put up with, this is nothing but it does make driving (with in effect one hand)  difficult.
Friday 345 Views.

It appears that Ryan is still having some uncomfortable spells. I hope to find out more when I visit this evening with Sarah.

Apparently Ryan had an awful night and had to be sedated to above the normal limit. Bob is going up to relieve Rachel tonight and Sarah and I will be there tomorrow. 

Becky, Bob and I went to see Ryan last evening. He is now in a single room and was heavily sedated. The plan is to keep him this way, as when he wakes up he is very soon in agony from the pain in his stomach. There is talk of relocating him to the local hospice.
We had a new record page viewing yesterday with 212 visits. I am sure Ryan would wish to thank everyone who takes an interest in him.
LATEST. Just had a text message from Rachel saying Ryan had a good night and is now watching TV! He is such a strong lad as there is no way he should be able to do this with the drugs he is on. Anyway, he is not in pain and has now drifted back to sleep.

Back from visiting Ryan at 6.30 this morning after witnessing him in considerable pain for many hours. After a significant amount of all sorts of pain relief, he eventually fell asleep at around 4am and was still asleep when we left. Poor Rachel looked washed out by then and is in need of some sleep herself.
I'm hoping Ryan stabilizes enough for me to relieve Rachel for a few hours so she can get some rest. Knowing her though, it will take some effort to get her away from him.

Ryan is now in HDU. Apparently he is OK until he gets something in his stomach and then he is in agony. We (Bob and Becky) are off to see him this evening.

Ryan back in hospital again. I will post further information when I get it.
LATEST. Ryan is in the Gastro ward and following an Xray, an excessive amount of trapped wind has been spotted. This can cause an immense amount of pain and we hope the doctors in Newcastle are able to sort this ongoing problem out.

I understand that Ryan had a very painful night and may have to go back to hospital. I will update as soon as I know. Worrying times.

Things got a bit worse and Ryan is now in hospital in Newcastle. 
LATER. Good news, Ryan has been discharged and is now home.

Ryan is not so well today and Rachel has called the doctor to see if he needs a course of antibiotics.

Rachel says Ryan had a bit of a rough night on Tuesday but was not too bad yesterday.